My father’s walk through Alzheimer’s is nearing the end.
The following is an excerpt from “Where’s my shoes?” My Father’s Walk through Alzheimer’s.
Each time there is a change in Mardig’s condition, I get a call. (We called my father by his first name in Armenian–MAR-deeg for Martin.) Starting January, the calls come more frequently.
Your father is anemic.
“Brenda, your father is anemic. His red-blood cell level is low. There’s occult blood in his stool.”
Each time they phone, I panic. This is it, he’s dying!
We talk for twenty minutes, I ask many questions.
“Mr. Avadian’s doctor suggests if you want more information to follow-up with a gastroenterologist who will look at the stool samples and possibly recommend a colonoscopy.”
I send a detailed email to caregivers asking how they’ve handled a similar situation. We caregivers know, by pooling our knowledge, we sometimes have more information than busy doctors!
Nearly every caregiver writes about the physical strain to prepare for a colonoscopy: fasting, enema, and anesthesia. One caregiver summarizes it best, “If he’s not in pain, let nature take its course.”
After a week of phone calls and emails, I give the skilled nursing home [SNF] my decision: Mardig is to be given iron supplements (per the doctor) and I will bring in soymilk (I read about it helping those with anemia).
Your father has difficulty swallowing.
“Brenda? We need to put Mr. Avadian on mechanical soft food.”
I panic. Gulp! This is it! He’s dying! I take a deep breath to slow my racing heart. Sounding as calm as I can muster, “Yes, uhhh, mechanical soft. Why?”
“He’s not eating his food.”
“Why?”
“He’s having difficulty swallowing.”
I can see it now; the next step is a feeding tube! “Oh, he cannot swallow? Is this like pureed food?”
“No, our cook cuts up the food so Mr. Avadian can easily chew and then swallow it. Pureed food is the next step.”
Silence.
“Hello?”
“Yes . . . this is the beginning of the end, isn’t it?”
“No, Mr. Avadian is doing quite well. He just needs a little help to get his food down.”
Your father has pneumonia.
In February, I answer the phone and hear: “Mr. Avadian has pneumonia.”
“How did he get it?”
“I’ll have you talk with the nurse.”
The nurse explains, “Brenda, he has a fever. He caught an infection. The x-ray shows lower-lobe infiltrates.”
Yeah, whatever those are! This is the end. I know it! I need to talk to someone about hospice.
“He’s on oxygen right now. But he needs antibiotics.”
I definitely need to talk to someone about hospice! Oxygen? This is the end. My frantic insides defy my outward composure, “Okay, give him antibiotics.”
I write to June Kolf, a former hospice volunteer coordinator, author of grief-related books, and a dear friend. She asks, “Why are they giving him antibiotics? Brenda, did you know pneumonia is nicknamed the old person’s friend?”
“No.”
“Yes, it’s called that because it often releases people from this life when other diseases cannot.
I keep June’s pneumonia comment in mind for next time. Mardig recovers. He seems to be tired constantly. Sometimes when David and I visit him, we can’t wake him. We visit other residents and then go home. It seems, he needs more rest.
Your father needs a Geri-chair.
Early March, there’s another call: “We need your approval to place your father in a Geri-chair.”
“…a Geri-chair? Aren’t there any other options? He’ll become like the other residents in Geri-chairs . . . drooling with their mouths hanging open in a half-dead stupor, ignored in the hallways.” Did I just say that aloud?
“Your dad is a lot more functional than some of our other residents. You don’t have to worry about this. This is for his safety.”
“But . . . ”
“Next time you come in, talk with the director of nurses about this. For now, I need your approval.”
I exhale a long SIGH. “Uhhh, okay.”
We receive other calls. Each time we’re assured he’s far off from needing hospice.
Four weeks later, on a Friday morning, March 30, 2001, we’re having difficulty feeding Mardig his breakfast. He’s not swallowing and his cheeks are filling with food.
The following evening, my father suffers a massive stroke and falls into a coma. Thirty minutes later, he’s gone.
For years, I live with regret that I was not by his side. As time heals my wounds, I feel fortunate that he passed quickly.
Edited EXCERPT from “Where’s my shoes?” My Father’s Walk through Alzheimer’s soon to be released as an eBook.
Such stories. Thank you. My mother, who was diagnosed with Alzheimer’s in her early nineties, died the day before her 102nd birthday. I was out of town, getting ready for my mother-in-law’s funeral, when I received that final call.
That is sad…how you’re busy preparing for one loss while your mom passes right before her 102nd birthday.
Thank YOU for writing, Mary Ann.
I am amazed at all you have dealt with and know that someone I may be on the same path. Thanks for all the extra awareness this site provides me. We are all in this journey together. There is light at the end of the tunnel and I’m waiting for it to get bright.
It will get “bright” again, Don and that’s why it’s so important for us to take care of ourselves too, while caregiving.
Remember: I’m a Caregiver and I Matter.
Wow . . . we’re just now starting to get calls like this about my mother-in-law, who has been in a nursing home since a serious infection last fall accelerated her Alzheimers. She is also dealing with diabetes and dialysis twice a week for renal failure. It’s hard to know when to switch from curative care to palliative care when it’s known that there is no “better.” Even having done this once before when my mom was diagnosed with pancreatic cancer, it’s not any easier.
I also thank you for sharing this excerpt, Brenda. For 24 years, starting with the first heart attack, every time I received a phone call regarding my Father, I thought it was the end. At first, he was given 5 years to live. It wasn’t until 17 years after the first heart attack that he had the second one. (Ironically, he was already IN the hospital for a different procedure). That’s when they put the V.A.D. in that kept him alive until Valentine’s Day of this year. Amazingly, it wasn’t the heart machine that failed him. It was a number of other diseases, including developing cancer last year, that ultimately let to his demise. The worst of these, however, was the COPD, which I unknowingly never realized caused a form of Dementia due to the lack of oxygen flowing to his brain. I used to get mad at him for forgetting my name on the phone, and confusing me with one of my step-sisters, but now I realize it was Dementia. I wish I could have one more conversation without that anger. I appreciate your courage in sharing your father’s story. It was so hard to live with the “Is this the end?” phone call for all those years. I’m having a hard time believing that the end really did happen. At least I know I’m not alone in some of my regrets.
Thank YOU, Lynette for sharing this experience. Reading your experience and Carmen’s reminded me of my mother who suffered from congestive heart failure for 13 or so years…she just wanted to die. It was three years and a few months after her passing on April Fool’s Day of all days, that my father was diagnosed with dementia.
Thank you all for writing comments.
I hesitated putting this post online and now I’m glad I did.
Thank YOU, again.
Being at nursing home now nightly for 2.5 years, some people you think would not last the night from the look of them…in a daze, half skeleton, slumped over, hardly responsive…are still there, surviving along the way pneumonia, bed sores, etc.
I will never forget some doctor at Kaiser pantomiming a ski slope with little plateaus regarding Mom’s supposedly deteriorating condition. they called in the hospice team and they visited at home and did assessment. I was happy for the extra visits and direction they gave me. Exercises. they yanked her off hospice program within a month…
There were many times I thought “this is IT”… surely THIS is it! You would be surprised at how resilient the human body is. So many parts…they all HAVE to work to stay alive, and somehow they ALL keep going in sync.
Mom was mistakenly put on liquid diet protein shake for over a year, and then I kept pressing for pureed. She is “thriving”on both.
Carol, I know YOU KNOW…and what you write has been my experience too. It is your constant presence in your mother’s life–the joy you bring to her despite the pain you feel in your heart to see her quality of life slowly drifting away–that gives her reason to live.
My mother used to say to me “Why can’t I just DIE?” Life was so hard with her losing her health and her mind. The problem was she was aware of it at times and during the lucid moments she would always say this to me. I would explain that physically she didn’t have any conditions that would end her life so until her organs decide not to work, she was basically stuck here. She wanted to go. She always felt like she was a burden because I was her full time caregiver. She’d tell me to put her away and I would remind her that we had a pact, that if either of us were ever in need of full time care, we would be there for each other. So I was.
There came a time when she had a minor heart attack and we were advised that she was now in congestive heart failure. Mom looked confused so I explained it to her. I told her she has finally got her ticket out and that soon she would be with her parents, her sister and my brother again. I told her they would be coming for her and she smiled.
Within a week, she was home on hospice, and six days later she got her wish. I saw my mother’s spirit rise up out of her body. I also saw my grandparents, my aunt and my brother! All of this happened (my girlfriend was there and saw it, too) nine hours before my mother’s body actually completely stopped. She got a “get out of jail free” card. It was the most amazing experience in my lifetime….to experience the rapture of my mother and see my family who has already crossed over. WE DON’T DIE…only our bodies do.
I could feel my mother’s joy and it completely took the sting out of her death. It was resurrection! My brother put his hand on my head and is other hand on my mother’s head and he lifted his arms up. I saw her spirit rise. And whooooosh, they were gone. I was left looking across my mother’s bed at my girlfriend whose eyes were the size of silver dollars. I said to her, “Did you think we were going, too?” She nodded her head and said “I felt myself lift up!”. So it was then we had the conversation about “Why are we here, and what do we need to do to go THERE!!!!”
Wow. We have powerful spirits!
This is not the first instance when I’ve known that someone was “gone” before their body was gone. My mother-in-law paid my husband a spiritual visit when she left her body. He spent time with her spirit and also was never sad after that. She actually passed about 4 hours later, in another town. My girlfriend was on a plane trying to get to her dad before he passed and she told me she felt him on the flight with her. He came to see her before he was gone.
This is our earthly journey but we have much to look forward to after this chapter!
WOW, I am sitting here with goosebumps…that tingly feeling everywhere.
AMAZING! I consider your experiences an honor. WOW. Truly truly amazing, Carmen.
I know it took you a while to write all this…THANK YOU for sharing tho. WOW.
Brenda, thanks so much for sharing this. Very powerful, and I am sure, and hope that writing about it has helped you to heal the regret you’ve had. I had a similar progression with my mother-in-law a few year ago, where it was hard to tell if ‘this was it’ every time we got a call, and like you, we weren’t able to be there when it finally happened, which, we’ve felt regret for too. Again, thanks so much for sharing your story.
David, thank YOU for taking time to share your own experience. We’re all together in this journey. Brenda